NF Support

I have recently started working for the Children's tumour
Foundation/NF Australia. I also work with The Murdoch
Childrens Research Institute to assist with supporting the
children and their families who come to the new
Neurofibromatosis (NF1) clinic here at The Royal Children's
hospital (RCH). I have been lucky enough to have been
offered space with the very knowledgeable girls here at GSNV.
Despite my location I am here to support all members of the NF
community, adults and children alike, and not just those with an
NF1 diagnosis either. I'm here to support people with NF2,
schwannomatosis and those who have a question mark hanging over one
of these diagnoses.

What do I do? I support you, the members of the community, to
get the information and services you need. I'm also here to listen,
to support you when life is tough and to ensure that you are
heard.

I am working towards building a database of doctors and
specialists who see patients with NF. These names are gathered from
people like you, who are satisfied with the service and care they
have received. So, if you can recommend anyone to add to my list I
would love to hear from you.

Next week I am also hoping to put out a request for expressions
of interest for a family camp to be run on the Mornington Peninsula
at the end of October this year. We'd love to see you there! A
great opportunity to meet others with NF, to develop friendships
within the community, to get advice and support from people in a
similar situation to your own and to share create some great
memories. Costs will be subsidised by CTF, but details will only be
determined once we have received estimated numbers.

I am also in the beginning stages of developing an information
session to be held in Melbourne within the next few months. We are
hoping to get some great speakers to come along for an evening
focusing on the needs and health monitoring of adults with NF.

There has also been some interest in the development of regional
information sessions, which will take some time to get
underway.

My role with the NF1 clinic here at the RCH is still undecided,
but I'm hoping to be able to offer you the opportunity to ask for
me to sit in on your clinic appointment or for some space to be
made available for me to meet with you following your appointment
should you wish.

I and the rest of the team around me know that the transition
from children's services to adult clinics can be challenging, and
we will be looking at ways to make this transition easier. Watch
this space!

I've been enjoying getting to know members of the NF community
and the challenges they face, as well as hearing of their
successes! I am available throughout the week should you wish to
call for a chat.